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Multiple Sclerosis Centers of Excellence

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Multiple Sclerosis Surveillance Registry

The purpose of the MS Surveillance Registry (MSSR) is to understand the unique characteristics and treatment patterns of Veterans with MS in order to optimize their care in the VA system. Clinicians input MS-specific clinical data into the MSSR either through the MS Assessment Tool (MSAT) or from the web. Other data is automatically fed into the MSSR from existing databases. The MSSR allows MS clinics to view summary data charts of all their Veterans with MS, as well summarize MS histories for individual patients. Please see Figure 1 at the bottom of the page for a better understanding regarding the flow of information.

Video 1: An overview of the MSSR is presented in this video. This includes what data is collected, “smart” charts displaying the data, how to navigate the various tabs within the Registry and how to export data for your own use. 

Video 2: This video provides instructions on how to install the MSAT into VA's Computerized Patient Record System (CPRS).

Data from new and follow-up patients with MS are entered into the MSSR either via the MSAT or by a web-based method, covered in videos 3 and 4 below. Once saved, the information entered into the MSAT is immediately added to the MSSR.

Video 3: This video walks viewers through the process of accessing the MSAT via CPRS and then entering both new and follow-up patient data into the MSAT.

Video 4: This video shows how to enter patients into the MSSR directly through the website. A test patient was used to demonstrate how to enter an individual with MS into the MSSR. All data is fictional for this test patient. The video ends fairly abruptly to prevent unique identifiers from being shown on the full MSSR.  

History and Organization of the MSSR

The first step towards a national MS registry was the creation of a prototype data entry template and web-based clinician dashboard in 2013, through a collaborative effort between the VA MSCoE East and West and the VA Northwest Innovation Center at the VAMC in Portland, OR. This prototype served as the basis for a grant application to the VA Office of Information Technology (VA OI&T) for a national registry in 2013. Our team, led by Drs. Mitch Wallin and Joel Culpepper, was awarded a VA OI&T contract package in 2013 for national development and sustainment of the MS Surveillance Registry (MSSR).

Along with a federal IT contractor, the MSCoE team developed the MSSR within the VA Converged Registries Solution (CRS). The CRS platform is a hardware and software architecture designed to host VA clinical registries and eliminate duplicative development effort while maximizing the ability to create new patient registries. The common platform includes a relational database, HL7 messaging, software classes, security modules, extraction services and other components. The CRS routes data from the VA Corporate Data Warehouse (CDW), directly from the Veterans Health Information Systems and Technology Architecture (VistA), as well as by direct user input, into the MSSR.

In 2014-2016, the MSSR was piloted in Veterans Integrated Service Networks (VISN) 5 and 20 and modifications were made to the web-based input tool and data captured through the CDW. The web input tool, called the MS Assessment Tool (MSAT), was finalized and integrated with CPRS to allow for secure entry of demographic and clinical data into the MSSR in 2015. During this period, a method to roll out the MSSR and MSAT to VA Regional Programs was developed. A total of six VA MS Regional Program facilities were given access to the MSSR in 2016-2017. In addition, the ability to edit data that was input to the MSSR was added to the system.

Due to challenges of linking the MSAT through CPRS at each individual VAMC and the eventual replacement of CPRS by a new electronic medical record, the MSSR contract team developed a mechanism for direct entry of patients to the registry without the MSAT in 2017-2018. This method was piloted at VAMCs in Washington, DC and Portland, OR. A series of online videos was made in 2018 reviewing the set-up of the MSAT in CPRS, entry of patient into the MSAT, entry of patients into the MSSR web-based portal and viewing data in MSSR. The current flow of data in the MSSR is highlighted in Figure 1.

Figure 1. MSSR Data Flow and System Design. Tele-visits can take place via clinical-video connection at another health care facility, in the home or via telephone.

MSSR Image

 

For MSSR access and sign-on questions, please contact the individuals below.

MSCoE East: mitchell.wallin@va.gov and william.culpepper@va.gov

MSCoE West: steven.leipertz@va.gov and rebecca.spain@va.gov

MSSR technical or data questions can be addressed by mitchell.wallin@va.gov and william.culpepper@va.gov.